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26.2.15

Unicorn...

Did you know that back in the day and by "the day" I mean the 90's, Heart and Lung transplants were in fact the norm? No probably not unless of course you have gone through the process of being assessed for a heart and double lung transplant, it is something they feel the need to tell you and continue to tell you every pre-transplant clinic you see them at like it's new information they're giving you and not something they've told you every 3 months for the past 3 years. I politely nod though although my responses to the information have definitely gotten shorter in that time. The reason though? Well back in the 90's double lung transplants weren't as easy as they are nowadays, easy is probably the wrong word, the success rate for double lungs transplants was not great is what I'm trying to say. So if someone needed a double lung transplant they would more than likely do a heart and lung transplant because essentially it is an easier transplant to perform and sometimes they even did domino transplants where the person waiting for lungs would still have a a good heart and there was no point in it going to waste so they would be able to transplant their perfectly good heart to someone waiting for a heart transplant. Amazing right?! However fewer deaths actually are occurring nowadays and that has a lot to do with things like seat belts, increased health awareness and just generally double lung transplants becoming common practise. They would much rather save 2 people than 1 which I understand to an extent.

Nowadays we are very few and far between. If they can avoid you needing a heart and lung transplant they definitely will because they know how hard it is to get them nowadays. That is why they tried to find a way around the various heart issues I have. No luck though.

Why am I rambling on about all this though? I'm just feeling a bit alone at the moment that's all. Very few people that I know of can really get it. I made a lot of friends when I was initially put on the list, quite a few whom I would call some of my closest friends the thing though is several have tragically died or gone on to get their transplants. I remember having conversations with people when I was about 6 months into the list I remember saying that I thought I was either going to not have to wait very long at all or have to wait a very long time, at the time I considered 2 years to be a ridiculously long time which it is but that's how long I naively thought I was going to have to wait if I had to wait "a long time." I look back on 21 year old me and feel sorry for her because she was so full of hope that it would happen quickly I mean why would it take 11 months to get on the list an not happen quickly right?! Unfortunately something I have always known is that I am not a lucky person, I may have just about used up all my luck in that I haven't done this waiting thing in complete agony 24/7 there's probably only so much luck somebody can get right?!

I don't seek out or actively speak to people who have been put on the list anymore, some do find me and I do talk to them and love talking to them and I definitely wouldn't be rude and ignore them but I have to prepare myself for the emotional blow I will inevitably receive when they get their transplant before I do whether they've been waiting a week, a month or a year it's what happens that's why most of my transplant friends are either post transplant or have been waiting quite sometime themselves.

Probably not a good thing for me to do but I asked on one of my transplant groups this evening whether people knew of anyone waiting for both heart and lungs or whether they knew of any happening lately because I like to torture myself that way and morbid curiosity always wins out. Apparently so far between April 2014/2015 there has been ONE Heart and Lung transplant, that is just ridiculous especially when you think in 13/14 there were eight! Maybe they are over compensating by actively not doing them? I don't know because eight is a lot, or not a lot but a lot when you think previous years there was 3 then 5 then 3, eight is definitely way above the norm. If you have a morbid curiosity about these things like I do here's the link to the NHSBT statistic Pdf that tells you all you want to know about transplants since 2010.

If you ever wanted to see a Unicorn find someone who's had a heart and Lung transplant in the past 15 years, that's probably as close as you're going to get!

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.